Nightmare On NHS Street - denied PTU and corralled into radio iodine treatment/surgery.

[Mancunian_C]

So I posted a couple of times about being prescribed Carbimazole and having reaction, so I'm going to update.

1. After month on Carbimazole I developed neutropenic sepsis, and had zero neutrophils and 1.8 white blood cells. I had initial stages of sepsis for 3 days before receiving any medical care as an out of hours GP and A&E ignored fact I required immediate blood test and totally ignored what I was saying about Carbimazole. Another two days without treatment would have likely been organ failure and death.

2. Stayed in hospital for a couple of days on antibiotic drips and had two days of Filgrastim which boosts immune system.

3. Doctors on ward told me I could not leave hospital until neutrophils reached 1500, but kicked out following day by bed manager when my neutrophils were only 520 as they wanted the side room I was in and I refused to go on the ward where everyone was coughing and I basically had no immunity. Handed 5 days worth of antibiotics and sent home with neutropenia and high risk of more sepsis.

4. Immune system did not recover as quickly as it was supposed to and still hasn't.

5. Developed swollen lymph glands after three weeks and spent another night in A&E. This caused my immune system to plummet again to 850 neutrophils and 2.1 white blood cells.

6. When I initially came out of hospital I met with the Endo consultant and doctor and I was told surgery or radio iodine treatment only option, and refused the PTU option and told I would die if I took PTU. I stated NO to surgery, and radio iodine only permanent option I would consider and started to push to have PTU as option. Told I could not have PTU until my immune system returned to normal which it has not, even now after a full month on from the Carbimazole neutropenic sespis.

7. Met with another Endo consultant following week in same hospital and told I would have to take PTU or I would be high risk of heart failure. He totally contradicted the previous consultant.

8. In the middle of all this the other doctor did make referral for radio iodine and I was told that would not happen until May and the initial consultation would be with a nurse by phone, despite fact my thyroid is going up massively and I am on NO thyroid medication. I rattled everyone on that, and the consultation brought forward to last Thursday and made a face to face with a doctor. Then another doctor came in to the appointment and they both totally contradicted each other. One said I could start PTU until I decided to have the radio iodine, and the other other said no I could not have PTU. Radio iodine makes thyroid worse for a few weeks, and drives up risk of thyroid storm so PTU should also be recommended to support that.

9. I've been booked in for radio iodine this Thursday and feel I am being corralled into this through lack of anyone allowing me to start the PTU as an alternative option to see how that goes. Radio iodine normally causes underactive thyroid and no one is being truthful about that either. All doctors have stated it is 50/50 that thyroid will go underactive, but everything I have read has stated 100% of people who have radio iodine go underactive within 12 months of the treatment. That will mean I have a whole new set of health symptoms and impacts to deal with, and will be on medication to the day I die.

Quite frankly, and to be blunt, I am absolutely 100% fed up at this stage. I feel everyone is lying to me, and the Endo consultant who told me I would risk death if I went on PTU was more than happy to try to push me to have risky surgery under general anaesthetic that could lead to bigger issues. The only decent person who is consistent thus far is the female doctor, and the consultant who did recommend PTU seems to have fallen off the map and I've never seen him again. I have been consistently denied PTU on the premise that my immune system would have to return to normal, despite zero NICE guidelines to that effect. I am now inclined to not have the radio iodine owing to the bad advice I'm getting. I have considered getting a court order to have prescriptions for the PTU.

Three family members have all been on Carbimazole (my sister, and two of my nieces), and both my sister and one of my nieces are now off all medication as their thyroids returned to normal. I am being denied this choice by doctors (with the PTU option), and I am now being pushed into a situation where I have no chance of being healthy or medication free ever again. It is medical misogyny and bullying at its finest, wrapped up to look like healthcare. I have been 'poo poo'd' by the lead consultant for expressing my opinions and questionning matters. I have no doubt at some point he will decide to kick me off their books for raising too many issues and challenging the multiplicity of conflicting opinions and advice.

So to sum up, I firmly believe my outcomes are bad every which way I look, and I have a set of doctors more than happy to dice with death by denying me PTU and raising my risk of heart failure and other less fatal health impacts in the short-term so as to play out their control game of medical 'Gods' rather than listen to my concerns and allow me to explore all options. I would honestly consider my best option to be cancel the radio iodine and pursue court order for PTU treatment as a basic human rights breach at this point.

I do not trust any doctor at this stage, and firmly believe that ego and playing God is more important to them than the health and longterm outcome of patients.

[Rapunzel]

PROPYLTHIOURACIL (PTU) (proe pill thye oh YOOR a sill) lowers the amount of thyroid hormone made by the thyroid gland. It treats hyperthyroidism (where the thyroid gland makes too much hormone). It also is used before thyroid surgery or radioactive iodine treatment.

[Mancunian_C in reply to Rapunzel]

Yes, I'm aware of what it is and what it does. The issue is no one will give me the option to use it instead of nuking my thyroid permanently.

[Rapunzel in reply to Mancunian_C]

I posted this for other members, Mancunian_C who like me, may not have a scooby what PTU means.

[liddoljak in reply to Rapunzel]

Was just about to ask what PTU was 😊

[humanbean]

One of the things that come to mind for me (and I've never been hyperthyroid, I'm hypothyroid - so I'm only guessing) - I've read that NHS doctors are being ordered to reduce the numbers of prescriptions they write because it is believed that over-prescribing is a major problem, and the government wants to reduce it to save money.

This is a recent report on over-prescribing that was published last month.

healthinnovation-em.org.uk/...

If you were prescribed PTU and it was successful in getting your thyroid under control, then you might need further prescriptions of PTU for months or even years. However, I can't see why your doctors are being so persistent in refusing you PTU permanently.

I wonder if you are going to have problems getting a doctor to agree to prescribe PTU because they close ranks.

You could ask the stubborn doctor(s) for a letter giving their reasons for refusing PTU. I don't know if it would be helpful, but at least you would have something official to research.

I could suggest writing to your MP, although if they aren't trained in medicine I'm not sure what they could or would do, if anything.

I don't know if any of these links might have anything helpful to say :

The BTF is the British Thyroid Foundation, which is an "official" patient organisation.

btf-thyroid.org/antithyroid...

The BTA is the British Thyroid Association, which is a professional organisation for endocrinologists and doctors. Some of their links to professional resources might be of use in some way.

british-thyroid-association...

and this is their links to patient resources.

british-thyroid-association...

This link is to drugs.com (an American website that might have some helpful info) :

drugs.com/mtm/propylthioura...

Another thing of interest might be the Yellow Card data from the MHRA on PTU.

info.mhra.gov.uk/drug-analy...

There haven't been a lot of Adverse Drug Reactions (ADRs) reported about PTU (there have been 210, which contained reports of 467 reactions between . There have been 4 fatal reports.) The time span over which this information was reported was from 1971 - 2024.

I hope something I've linked to might be helpful. You have my sympathies about your lack of treatment options.

Other links :

medicinenet.com/propylthiou...

[Mancunian_C in reply to humanbean]

Hi, thanks for that. Unfortunately I'm scheduled for the radioactive iodine on Thursday. My MP is a bit pointless. In honestly, I firmly believe none of them are telling me the truth. They also said I have Graves but no one will share a copy of the blood test results. At this point I think I'm going to bail on the radio iodine and get a court order to ensure the PTU. I don't trust any medical avenue to give honest advice, and given what I am seeing on here, a lot of people are being shoved down routes that are not in their best interest. I will be checking out the PTU costs as that is not something I had considered, and if this is a cost based decision, then I most certainly will not be following through on it.

[SnowQueenOne in reply to humanbean]

Hi humanbean

Read your comments about the NHS doctors being ordered to reduce the number of prescriptions with interest. Saw a consultant 19th March, received a copy letter 26th March where he's clearly asking my GP to prescribe 3 meds. I chased up this Monday as heard nothing. I was initially told the email the consultant sent through didn't have an attachment. I asked if they'd gone back to query. No! I was told. When I pointed out I had a copy and could clearly see what was being asked, the receptionist said "Oh, I've found it".!!!! As of today I'm still waiting. Unfortunately this has happened regularly over the last 5 years.

[Judithdalston in reply to humanbean]

Rather an aside, but your link to Polypharmacies was interesting…I’m under 75 and on 11 prescription meds.and no dr.( except my son , a psychiatrist) has ever sat down with me to review them, or suggest their interactions may be causing problems. Just yesterday after a lot of research I had a phone appointment with a locum GP for me to suggest I came off one of the 4 hypertensive drugs my regular GP has put me on as I have disabilitating symptoms that may be side effects! The ‘regular’ GPs just seem to add another prescription drug when ‘needed’….

[humanbean in reply to Judithdalston]

Taking 11 prescription meds must be a nightmare. The idea that none of them are interfering with each other and none of them have debilitating side-effect is absurd to my non-medical mind. I can see why over-prescribing is a problem if doctors never want to do proper prescription reviews and don't take reviews seriously.

.

I have the opposite problem to over-prescribing. I'm now in my 60s. My GP records were flagged in my teens because doctors assumed that I was drug-seeking and a hypochondriac. In fact, I wanted help with absolutely excruciating period pains, and (what turned out to be) very dense adhesions from delayed and botched surgery when I was 13. I never did get any help, even though the endometriosis and adenomyosis I had were discovered about 20 years later when I had a hysterectomy. The warning flags (which never get removed as far as I know) still take precedence every time I see a doctor because it seems to be the first thing that anyone sees when they look me up on their computers. The endometriosis is barely mentioned in my records, and the adenomyosis was only mentioned to me verbally and was never recorded in my records. When I bought a copy of my own GP records about 10 years ago I discovered that medical record-keeping is absolutely shocking.

I even had to fight to get a PPI (that used to be dished out like sweeties when I was younger) in my 50s after I was diagnosed with gastritis in my 40s.

I eventually got some pain relief that helped my permanent surgery damage in my 50s.

.

Another thing that almost certainly causes over-prescribing is the fact that doctors are (deliberately, I'm sure) never taught to test and use vitamins and minerals because such supplements can't be patented and won't make Big Pharma lots of money. They also almost never review their reference ranges for things like iron. For example, did you know that vitamin D ranges were first set to prevent rickets. It is now known that vitamin D does a lot more than prevent rickets. - but you probably need a much higher level than most people have.

academic.oup.com/jes/articl...

Throughout most of my life a ferritin level of 13+ was considered "normal". I felt a lot better when I treated myself and got my level up to about 80 - 100 (which is still within the reference range).

Sorry to the OP of this thread. I've wandered off the subject.

[Judithdalston in reply to humanbean]

Yes Drs.seem to rarely test for vits/ mins, and when they do consider the result Even ‘on the low side’ etc. it was finding this Forum that encouraged me to top up my various levels, which can be difficult around 11 meds! I was having difficulty with what I thought I had narrowed down to my Thorne complex B capsule not dissolving in my guts , and apparently solved the problem with a tiny Igennus B-Complex one, only to discover the same complete capsule again in the toilet pan yesterday, and only one it can be is the ‘nice’ 3 Arrows heme! Weird, must have been that all along…no wonder after years my ferritin level stays stuck in the 40s!

[Mancunian_C in reply to Judithdalston]

I managed a prescribing safety project at a uni medical school. This was precisely what it was aimed at - drug interactions and no medicines reviews. The people we worked with were community pharmacists who were very clued up. I could suggest you speak to your local community pharmacist and they may help and also advocate with your GP.

[Judithdalston in reply to Mancunian_C]

Yes I have found pharmacists much better, their knowledge and interest is superior to many drs, but also they seem to be available at a drop of a hat, and if necessary even break into a Dr’s consultation to say ‘I’d like to speak to you when free’….

[PurpleNails Administrator]

Your care has been pretty terrible and your doctors disagreeing / changing the advice isn’t helpful either. I have experienced similar with a loved one I was advocating for. In the end I was blamed for not following the plan & changing my mind - when I was trying to keep up with their changing opinions. So after that. I did do what I thought best & if they tried to alter the plan they had me to deal with.

Usually it’s important the thyroid is under control before either surgery / RAI is arranged as its expected levels can increase afterwards. The interference caused to the thyroid & the damage to thyroid cells causes the stored hormone to bereleased & if levels are already high the extra surge increases the potential of thyroid storm. This is why one doctor is saying you must have antithyroid prior to treatment & the other dr is looking at your reaction to carbimazole & not wanting to chance the same happens with PTU.

You’ve summed up your options yourself.

1) Argue for PTU which most doctors are not going to support

2. undergo RAI -

3. undergo thyroidectomy.

If you won your right for PTU and no adverse reactions occurred, treatment still has to be managed well & your hyper may not go into remission for a long time.

RAI is an easily administered procedure & halts the hyper in vast majority of cases. It’s not 100% as we hear of cases where it needs to be repeated. Issues surrounding Managing the hypothyroidism is often discussed here, but this forum is where they would seek help. Those who have good outcomes wouldn’t need to.

Similar with Surgery, most do well afterwards. Are you against surgery because you don’t want to undergo surgery / hope to keep thyroid / or do not trust doctors? Which is understandable.

I looked on the British National Formulary & PTU is a fair bit more expensive than carbimazole. We do hear of being chosen though. I don’t think doctors are under instructions to refuse it. I think it more that the knowledge of using it is poor & with your previous reaction with carbimazole drs are too afraid to chance it in your case.

[Mancunian_C in reply to PurpleNails]

Thank you for that.

The Endo team at my local hospital have been very friendly and concerned, but the sticking point is the next step and I've become a bit too complainy/vocal for their liking. My argument is they see so few reactions to Carbimazole (all are stating only once in a 10-12 year since they last found this issue in practice) that there is no clear blueprint or protocol and I'm being guinea-pigged rather than anyone listening to my genuine concerns.

At the moment my only option is to swap out overactive thyroid for underactive thyroid, and a blitzed thyroid that has no chance ever of remission, whereas taking the chance on PTU would perhaps bring the situation back in hand without any dramatic attacks on my thyroid.

The hospital endo team and the other hospital radio iodine team are being single minded that PTU will have the same reaction as Carbimazole/cross reaction with no guarantee this will happen.

It's very very frustrating. I started this being totally fine with the notion of medicating my thyroid back to normality, with chance of remission. Now it's being herded down a road that seems pretty crappy (no offence to anyone with underactive thyroids)!

Surgery is a step too far in my books, so RAI seemed to lesser of two dramas.

[Fruitandnutcase]

I think the bottom line is that by offering RAI or a TT the hospital gets rid of you off their list and you are pushed onto your GP who may or more likely may not be able to treat you with Levo or T3.

I had Graves years in 2012/3 and was constant.y being told that should I not go into remission I would be given RAI - I always said no but I even had one young female endo hold up an imaginary pill between her thumb and middle finger to show me how small the pill was! I still said no. The same endo also said that I would not become hypo when I no longer had a thyroid!

In the end when I was discharged I went to my GP and asked if I could be forced to have RAI - no I couldn’t. Or could the hospital refuse to treat me if I refused RAI and the answer to that was also no.

I think I would try your MP - they might be useless but at least it would be something because your treatment sounds pretty shabby - you are also legally entitled to be given access to all of your test results. They can’t refuse. Have you complained to PALS about your treatment - or lack of it?

Could it be that your endo is actually a diabetes specialist rather than a thyroid specialist? Failing that you could always just call in sick the day you are due to go to hospital.

Bear in mind though that there are probably a lot of people who no longer have a functioning thyroid who are doing very well and don’t come on here for advice.

I wish you the very best of luck.

[Mancunian_C in reply to Fruitandnutcase]

Has your Graves gone into remission?

Yes, you are spot on. The doctor I see does both diabetes and endo, and I'm wondering if diabetes is her primary area. They all seem to have a foot in both camps, so difficult to know what their strongest area is. The head of the department has written some research papers on thyroid, so perhaps his strongest/preferred area.

Yes, NHS is about shunting you on somewhere else and off a current waiting list or patient list. When I originally started Carbimazole the waiting time for Endo was 1 year normal, or 6 months for expedited appointment, so they are pretty overwhelmed and any pain in the behind people need moving on fast!

The issue with MP and PALs is that involves waiting for people to come back and I am on no medication apart from beta blockers and my thyroid is going up up fast.

I spoke again with the RAI doc this morning and he's very clear that PTU is a bad option, but again, how many people have been researched making the shift from Carbimazole to PTU after reaction to Carbimazole?

I agree that those who are having a bad experience are the most likely to come on here to post, so it might be a skewed number rather than a true picture.

Thank you again for your response, and it's food for thought.

[Fruitandnutcase in reply to Mancunian_C]

Yes, I’ve been in remission since 2013 - unfortunately I developed inflammatory arthritis in 2015, went totally gluten free at that point my thyroid antibodies went right down, could have been going GF or it could have been their time to drop then I discovered I have osteoporosis in 2020.

Nobody warned me of the very strong link between Graves, inflammatory arthritis and osteoporosis so watch your bones. Get lots of weight bearing exercise if you can and eat a bone healthy diet.

Your hospital really ought not to be leaving you without any treatment, that seems weird although I suppose they will say it is because they have booked you in quickly for RAI. Could you change to a different hospital?

You really are stuck between a rock and a hard place. What would happen if you said you would prefer a thyroidectomy? That might be preferable to RAI.

[Judithdalston]

Being someone who got septic shock/ sepsis from a routine medical procedure I have first hand experience of how rattled the medics get afterwards….mine just disappeared into the woodwork never to be seen again, covering their tracks through my medical notes, nor bothering to refer me onto other depts. I became to need ( diabetes and gastroenterology)…so your reaction to Carbimazole might well be a very important factor in their decisions!

[Mancunian_C in reply to Judithdalston]

I'm sorry to read that has happened to you and I hope your recovery was speedy. Yes, the covering up has begun as I had anticipated, but not with the Endo team, but the original out of hours GP who sent me home with no blood test and assertions that A&E would not do blood tests. I still went to A&E that day in defiance of her assertions, and she is now claiming that she was the one who advised I go to A&E. I knew this would happen, so not surprised you found the covering of tracks also. The reality is sepsis can be caught on time and treated, so as bad as it is, it can be stopped and treated hopefully successfully, so the covering of tracks is not helpful as it prevents learning and mistake not reoccurring.